Lepro mets

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Mara I am going to take your advice - I had an oncologist say some really confusing things to me this week and I just think I need to take a break from the rollercoaster. Is your chemo the perjeta, taxol and hercepten ? You have had a lot of intervention in a really short period of time, I don't know how you are doing it - sending lots of good vibes your way.

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Rose I am so glad to hear you are going home - a month is such a long time to be away from home. I really hope your PT and rehab keeps you up and about - it makes such a difference when you feel like you still have some independence. I went to the grocery store myself today and ended up vomiting in the bathroom, I felt so embarrassed. For now, I can't seem to eat anything solid so my little girl made me some jello (so cute), but mashed potatoes sure sound good !! You seem like such a survivor Rose💪🏻
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  • jobur
    jobur Member Posts: 726
    edited November 2016

    KT, Rose, and Christine ~ As Rose said, I so wish you weren't in this situation, but I am glad to see your updates and know you are all dealing as best you can.

    I hope it feels very good to be back home Rose and glad to hear you are able to care for yourself and have support when you need it. Who would have ever thought mashed potatoes could be such a treat, right?

    KT, so glad to hear hospice is treating you well and you have been able to eat and get good rest, that is so important! I hope they pamper you to the max and you continue to feel better.

    Christine, my heart goes out to you, it sounds like you are in such a scary place. And trying to get all your paperwork and legal docs completed while worrying about what will come next must be exhausting. I hope you are able to take time to rest and take care of yourself.

    I think of you ladies every day. Sending hope and hugs!

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Girlwarrior, yes, I am on herceptin/perjeta/taxol. I am not reacting well to the taxol so am going to drop it. I plan to stay on Herceptin and Perjeta. I have been scanned twice and still NED so not willing to suffer the taxol. Can't eat right now. Need qol, not getting it, so taking matters into my own hands. I was starting to recover from the WBR and taxol knocked me down. Gonna get the taxol out of my system. Sorry to hear about the grocery store, but glad you are out there.


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  • bluepearl
    bluepearl Member Posts: 961
    edited November 2016

    How does one end up with lepto? My sister had a spinal collapse (2 vertebrae) two years ago from breast cancer mets. Is she likely to get this?

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Rose, mashed potatoes can be very good. Continued enjoyment for you for sure. Sorry the walking is not working out but glad that you have help, and can look after things yourself. Certainly is important that insurance helps cover it.

    Thinking of everyone KT, GirlWarrior as well.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2016

    Hi girls thank you for your continued support.

    I've a good few today's in here. Today the first one waking with nausea & pain, but we figured it was because I had slept flatter that usual, so I won't do that again! I've had lots of visitors & health proffeisionals popping in...(can be overwhelming!)

    Blue pearl, I don't know why/how my LM occurred - my onc didn't for sure. I had bony spinal and skull mets as well as tumour on my spinal cord itself & ?pineal gland in brain.

    Take care, hugs

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Bluepearl, LC can develop from a variety of solid non/solid cancers, just 5% from breast cancer but because of the high frequency most people with lepto have breast cancer. It is likely to come after a long period of metastatic disease (not the case with me) and there are a number of different pathways that can develop into LC. Spinal collapse is not one of those pathways - arterial route probably most often, and most common with ILC. Also some evidence of increased incidence of LC after taxol based therapies, especially neoadjuvant.

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited November 2016

    Glad to hear you are hanging in there KT - I hope you get well rested and get rid of the pain and nausea. Please keep us posted how you are doing.


    Mara, I am really happy you are dumping the taxol. I developed lepto as my first metastatic site, followed shortly by bones and I can guarantee it was because of the taxol. I remember when I was dong the Taxol the year before thinking I should not be doing it, and exactly what I was afraid of happened.

    Mara how long did it take to recover from the decadron after wbr, I am down to 2mgs per day and I am just dying of tiredness.

    Hope all is well Rose and Jobur thanks for chiming in. Kind words, hope and hugs will carry me!
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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    Hi Jobur! Always nice to have you by our side. I hope you are well.

    Kt, I hope the nausea subsides and you can rest comfortably. Sleep is so good for us. I fell asleep eating tonight!

    GirlWarrior, (((hugs))) to you. We're a small but mighty group, all here for each other.

    Mara, qol is absolutely it. Good for you for taking matters into your own hands. We have to!

    I'm almost 7 years into stage iv so LM doesn't totally come as s surprise. I did have a spinal tumor in 2010. Still, I didn't know how rough this is. I'm sooooo exhausted!

    Love to you all...

    Rose.



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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    How is everyone? I've been thinking about you all... hope those who celebrated Thanksgiving had a nice weekend. More mashed potatoes for me! I've been soooo tired. All I want to do is sleep.

    I meet with MO tomorrow to see where things stand. More chemo coming up,

    Love toall...

    Rose.


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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Good to hear from you Rose. Glad you are still enjoying the mashed potatoes and hope you had a nice Thanksgiving. Please do let us know what is found re chemo.

    I still am tired from chemo, but eating is better. Fatigue easing too. Hopefully stays that way. Will see onc dec 6 to discuss dropping the Taxol. Since am not dealing with progression, refuse to take chemo. I would only take it back IF my government won't let me have the HERCEPTIN/PERJETA. Free healthcare means government must approve. Fingers crossed. I just hate to have to use it when I am just trying to stay NED. Being a targeted therapy for me, the SE are way milder than with the taxol added in and they are only to try to avoid mets from the neck down.

    You girls still amaze me with all you are dealing with.

    Little worried about kt, hope she is just getting well-deserved rest.

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  • steelrose
    steelrose Member Posts: 3,798
    edited November 2016

    I just got back from visit with MO. My numbers are going the wrong way. I'm getting another chemo infusion on Thur. and if that doesn't turn it around... well we're in agreement that Plan B sucks. That's radiation to spinal fluid every day for 3 weeks. NO, Quality of life for me! MO agrees. So I'm planning a fun Xmas.

    Thinking of all of you. Peace and taking control!

    Rose

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  • mara51506
    mara51506 Member Posts: 5,088
    edited November 2016

    Good for you Rose, I hope you do have a fun Christmas. I think radiation to your spinal fluid sounds perfectly dreadful itself. I hope the chemo can help take care of things so Plan B can just sound like a perfectly ridiculous idea. Good luck.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited December 2016

    I am so sorry to have to say that KT has passed away as of yesterday. My thoughts go out to her family. As with everybody here, she has been through so much. Glad she got a few weeks where she felt decent in hospice. Be free now, no more pain.

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  • jobur
    jobur Member Posts: 726
    edited December 2016

    I am so sad to read this news about KT. May she rest in peace and her loved ones find comfort. Thank you for taking on the sad job of letting us know Mara.

    Rose, I have always been drawn to your posts as your kind and gentle spirit shines through in them. This is where the steel comes in. I am still hoping that last infusion will turn the tide for you. If not, I am on your side for QOL and doing it your way. Hope you have a fantastic Christmas!

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  • Mab60
    Mab60 Member Posts: 487
    edited December 2016

    rose,

    I could not say it any better than jobur. I also said a while ago that I felt bonded with you. I always look for your posts and think of you often.

    Mary Anne

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  • Hernie
    Hernie Member Posts: 1,016
    edited December 2016

    Hello friends, I am very worried about our beautiful GirlWarrior. Let's help her find every precious moment. Please send all your hopes and hugs to her now. Thank you.

    (((GirlWarrior)))

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  • mara51506
    mara51506 Member Posts: 5,088
    edited December 2016

    Thinking of everyone here. Girlwarrior, Rose sending you special thoughts too.

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  • Mab60
    Mab60 Member Posts: 487
    edited December 2016

    rose, hi! I always Look for your posts but have not heard from you in a while. But I wanted you to know I am still thinking of you Often and hope to hear from you soon.

    Your friend,

    Mary Anne

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  • jobur
    jobur Member Posts: 726
    edited December 2016

    GirlWarrior, sending hugs and hope to you tonight. And hoping you are surrounded by comfort and love.

    Rose, I hope you are busy enjoying that fun Christmas you mentioned in your last post. And able to enjoy more than mashed potatoes.

    Peace to us all.


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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited January 2017

    I am sitting here in the dark on the Eve of Christmas Eve. My daughter is fast asleep beside me and I can hear her steady breathing. If I look out my window I can see the snow and the Christmas lights across the street on my wonderful neighbours house. So, so peaceful. When I was diagnosed 2 months ago, they told me I probably would not be here for Christmas. Yet here I am. I don't know what miracle pulled me out of the darkness, but I am so grateful for all of your prayers and support. And I am equally saddened to know that others have moved on. The reality of this diagnosis is never far away. Blessings to all - find your strength.

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  • jobur
    jobur Member Posts: 726
    edited December 2016

    GirlWarrior, I am so happy to see your post and feel the peace that surrounds you. Here you are indeed! Wishing you and your dear daughter many blessings and a miracle or two.

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  • Mab60
    Mab60 Member Posts: 487
    edited December 2016

    girl warrior, I also feel at peace a little knowing you feel the peace surrounding you.

    Wishing you and your daughter well spent time together. My prayers are with you this Christmas.

    Mary anne

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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited December 2016

    Thank you Jobur and Mary Anne - I do feel truly blessed. I am so happy to be pulled in to this moment of peace and love with my girl. Happy Holidays Everyone

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  • Mab60
    Mab60 Member Posts: 487
    edited December 2016

    rose and girl warrior,

    Gw, your xmas eve post with your daughter really touched me.....so peaceful.

    Rose, I hope you were able to have that fun Christmas as planned.

    I think of you two ladies often and you are always in my prayers.

    Mary Anne


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  • dawny
    dawny Member Posts: 1,126
    edited January 2017

    Rose, how are you doing? x

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  • Mab60
    Mab60 Member Posts: 487
    edited January 2017

    rose and girl warrior how are y'all doing?

    Mary Anne


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  • GirlWarrior
    GirlWarrior Member Posts: 25
    edited January 2017

    Hi Mary Anne, I am hanging in there grateful for each moment. Tomorrow I see my med-onc where we will argue once again re: treatment/no treatment. We dont agree too much but she is still excellent. I have not seen Rose in more than a month - I really hope she is recovering fom her csf radiation. My radiation onc tells me that is very, very hard treatment. So I am sending all my prayers out to Rose for peaceful recovery and some good days ahead.

    Thank you for checking in.

    GW

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  • Hernie
    Hernie Member Posts: 1,016
    edited January 2017

    GirlWarrior, your appreciation for life... it is profound, beautiful, inspiring.

    I do so much hope that your MO can find some treatment for you. You are too precious to us.

    I had a mistaken Dx of LM before my met was found. You and all our sisters who are struggling with this beast have my deepest respect. I wish all of you peace, comfort, and joy.

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